I have been obsessing... So, either I need to go to the doctor and get a medication adjustment, or I need to speak out and do something about my obsession. Today the only good choice is the later: Speak out!
My obsession is simple: My kiddos! The mass shooting yesterday in San Bernardino, CA has opened a flood gate of emotions! Fear. Anger. Disgust. Confusion. These are the emotions I expect to have. Yet, I am also feeling love and gratitude...
Being a mother of two sons with Down syndrome has brought out the inner "momma bear" to an almost extreme level. As much as I would like to have my boys talk to me about there day at school. They simply cannot... yet. As much as I would like to be able to let my boys play outside without me hoovering over them. I simply cannot... they like to wonder off and have zero "stranger danger" skills. As mush as I would like to read a book at the side of a pool while they play. I simply cannot... they can be "over friendly" with people, especially cute girls... yikes! On the same hand I worry about them defending themselves in a dangerous situation. Caleb (the 12 year old) does not even recognize that when a dog growls that means danger (that is more autism than down syndrome). This is why the events of yesterday are so profoundly scary to me... It is not hard to simply say, "What if... my boys would have been at that facility?"
I am not complaining. Truly. I am not. I love my boys! I would do anything for them. And this is where the seemingly opposite set of emotions come in play. I am so grateful that we (our little family) are where we are. Not the physical location, but as a family. I am thankful that I am in a place in life that I can advocate for my boys and that my husband supports this role. When Joshua (our 8 year old) was born we knew some of the immediate challenges we would face with him. We also understood the long term implications as well, that both our children have a life long cognitive disability! They could go on to great things in their own right but cognition would ALWAYS be an issue. For the rest of their lives there would be a need for help. At this very moment we (Mom and Dad) are able to be this help. I am blessed beyond words that Frank went back to school so I could be that primary advocate and care giver to my boys!
Yet... again my heart breaks once more... So many families with special needs kids must have both parents working, or have a single parent situation. Facilities like the one in San Bernardino are vital to so many individuals and families. And at some point in time may be needed for my boys as well. The investigation is so fresh we have no idea of motive or if the individuals with special needs were even in that room. But the thought still runs through my mind, "My kiddos would have hugged the shooters!" My boys would be the run right into danger only because they wanted a hug or to say hi... That kind of blind love makes me cry...
Thursday, December 3, 2015
Thursday, April 17, 2014
Margaritaville ... what?!
One hot late summer/early fall day we were enjoying some family time in St. Louis (30-40 minutes from home). All of us were sweaty and gross by the end of the outing when Frank remembered that an acquaintance was having a family birthday party only a few miles away. He got this "great" idea that we would just find some clearance rack clothes and go enjoy some more family fun.
The plan was working... I found some great sale items. The boys were changed, hair was brushed and a little of Dad's cologne on ... we were ready. We had a great time! It wasn't until we got home and the boys were in bed that I started thinking about a comment made by one of the other guests... Caleb was being ... well... Caleb... and he was greeting everyone with a smile and hug. After Caleb invaded this complete stranger's personal space the man simply stated, "Well... he's obviously going to have a good time..."
People have said some pretty strange things to me... but, most are the sort of thing that I laugh at and think, Oh, when you think about what you just said you are going to be really embarrised! But I always knew the motive behind these comments (most meant to be encouragement but just came out wrong). But this one threw me for a loop... what was I missing? ... the guy was kind to Caleb... so what was so "obvious" about Caleb (just Caleb) having a good time... it was not said in a "poor boy with special needs" sort of tone... I was missing something... something obvious... but what?
A day or two later I was getting Caleb ready for school. I pulled out his new shirt, because it is a beautiful blue and makes his eyes pop! As I admired my handsome young man, looking so stylish and preteen'ish it hit me! As I read the screen print on this t-shirt I realized what it said: MARGARITAVILLE!
Oh my goodness... I bought and dressed my 10 year old son with Down syndrome in a shirt that said Margaritaville on it! WOW... talk about a bad mommy moment! I instantly became embarrassed! So, yes... Caleb was going to have "a good time" according to his t-shirt... Praise God, I never sent him to school in that shirt, or I might have been even more humiliated by the school. I could hear the phone call, "Mrs. Caines, could you PLEASE bring Caleb a different shirt, because advertising alcoholic beverages is strictly prohibited at the elementary school - or any public school for that matter!"
The fact that I am not the "party" type or the "get wasted" sort makes this shirt even more funny. To say the least I have turned "Margaritaville" into my painting/work shirt. Evey time I put on "Margaritaville" I just laugh at myself. Life can be so funny... can't it?! Because... when life gives me limes I make Margaritas (even if they are virgin)!
The plan was working... I found some great sale items. The boys were changed, hair was brushed and a little of Dad's cologne on ... we were ready. We had a great time! It wasn't until we got home and the boys were in bed that I started thinking about a comment made by one of the other guests... Caleb was being ... well... Caleb... and he was greeting everyone with a smile and hug. After Caleb invaded this complete stranger's personal space the man simply stated, "Well... he's obviously going to have a good time..."
People have said some pretty strange things to me... but, most are the sort of thing that I laugh at and think, Oh, when you think about what you just said you are going to be really embarrised! But I always knew the motive behind these comments (most meant to be encouragement but just came out wrong). But this one threw me for a loop... what was I missing? ... the guy was kind to Caleb... so what was so "obvious" about Caleb (just Caleb) having a good time... it was not said in a "poor boy with special needs" sort of tone... I was missing something... something obvious... but what?
A day or two later I was getting Caleb ready for school. I pulled out his new shirt, because it is a beautiful blue and makes his eyes pop! As I admired my handsome young man, looking so stylish and preteen'ish it hit me! As I read the screen print on this t-shirt I realized what it said: MARGARITAVILLE!
Oh my goodness... I bought and dressed my 10 year old son with Down syndrome in a shirt that said Margaritaville on it! WOW... talk about a bad mommy moment! I instantly became embarrassed! So, yes... Caleb was going to have "a good time" according to his t-shirt... Praise God, I never sent him to school in that shirt, or I might have been even more humiliated by the school. I could hear the phone call, "Mrs. Caines, could you PLEASE bring Caleb a different shirt, because advertising alcoholic beverages is strictly prohibited at the elementary school - or any public school for that matter!"
The fact that I am not the "party" type or the "get wasted" sort makes this shirt even more funny. To say the least I have turned "Margaritaville" into my painting/work shirt. Evey time I put on "Margaritaville" I just laugh at myself. Life can be so funny... can't it?! Because... when life gives me limes I make Margaritas (even if they are virgin)!
Friday, March 28, 2014
If These Walls Could Talk
Sorry for the delay... Life is moving faster than I am right now... Shortly after the last post we got horrible news that my mother-in's lung cancer has returned... deep breathes... (pausing to pray)...
As a result of this devastating news Frank and I began praying about moving closer to our families in Kentucky. We also asked God to make it abundantly clear because we don't do good with subtle ... well... He did! With in a two week time frame Frank had 2 interviews in Lexington, Kentucky, he signed a contract with one of them, he went with his mom to an oncology appointment, and we put an offer on a house... another deep breath... In the last couple months we have put our house on the market and have made several trips to Kentucky with loads of stuff. Every spare moments the boys are in school is being spent cleaning, painting or packing. And also remain insanely busy gathering information for the mortgage lender, talking with the boys' new school district, working with realtors in Illinois and Kentucky.
Just this week I was painting yet another room in our Mascoutah house. I was trying with all of my limited ability to get it completely done before Caleb and Joshua got home from school. But, standing at the top of the latter with a paint brush in hand I began feeling a bit nostalgic. I thought with mixed emotions, What if these walls could talk?!
Well... the walls could tell some horrible things! Like the fact that Frank and I disagree. There have been some down right ugly and shameful verbal fights. I wish I could say that we did not argue in front of the the boys but that would be a lie. I am pleased to report we have learned to fight a bit more "fair"... by setting some boundaries and owning our emotions rather than taking them out on each other. Or, the walls might tell you that I am not always patient with the boys. I have raised my voice more than I should. I have scolded out of anger/emotion rather than control. And I have said things I wish I could take back. Or, maybe the walls would share that I have struggled with accepting Down syndrome in my life. There have been many of tears shed over medical issues, therapy schedules, educational shortcomings, behavior problems, social embarrassments, sleepless nights... so on... and so forth... I have (and still do) wrestled with sever feelings of inadequacy - not believing that I am the "right" mom for these precious special needs boys... very deep sigh...
Despite all of the dark secrets these walls could tell, there are far more beautiful memories to be told! The walls echo daily with the laughter and chatter of two bothers who love life! The wall vibrate with the sound of boys' feet running laps in our home. There are sounds of great cheer as the boys accomplish new tasks that have taken years to develop. There are hours upon hours of stories being read. There are dance moves that create family supper starts. There are songs sung a bit off key. There are creative modern art (now painted over) on the walls. There are car races, ball games, smiles, hugs, kisses, jokes, adventures, discoveries, performances, songs, family work-outs, laughter...These walls are flooded with LOVE!
Just because God has blessed us with two boys with Down syndrome DOES NOT mean we have a perfect, story book life! I would argue that quite the opposite is true; that through God's divine wisdom He gave a very broken Frank and Betsy two amazing (but far from perfect) boys to teach us how to become whole, forgiving, grateful and loving ... Thank you, Lord, for my family and this home!
As a result of this devastating news Frank and I began praying about moving closer to our families in Kentucky. We also asked God to make it abundantly clear because we don't do good with subtle ... well... He did! With in a two week time frame Frank had 2 interviews in Lexington, Kentucky, he signed a contract with one of them, he went with his mom to an oncology appointment, and we put an offer on a house... another deep breath... In the last couple months we have put our house on the market and have made several trips to Kentucky with loads of stuff. Every spare moments the boys are in school is being spent cleaning, painting or packing. And also remain insanely busy gathering information for the mortgage lender, talking with the boys' new school district, working with realtors in Illinois and Kentucky.
Just this week I was painting yet another room in our Mascoutah house. I was trying with all of my limited ability to get it completely done before Caleb and Joshua got home from school. But, standing at the top of the latter with a paint brush in hand I began feeling a bit nostalgic. I thought with mixed emotions, What if these walls could talk?!
Well... the walls could tell some horrible things! Like the fact that Frank and I disagree. There have been some down right ugly and shameful verbal fights. I wish I could say that we did not argue in front of the the boys but that would be a lie. I am pleased to report we have learned to fight a bit more "fair"... by setting some boundaries and owning our emotions rather than taking them out on each other. Or, the walls might tell you that I am not always patient with the boys. I have raised my voice more than I should. I have scolded out of anger/emotion rather than control. And I have said things I wish I could take back. Or, maybe the walls would share that I have struggled with accepting Down syndrome in my life. There have been many of tears shed over medical issues, therapy schedules, educational shortcomings, behavior problems, social embarrassments, sleepless nights... so on... and so forth... I have (and still do) wrestled with sever feelings of inadequacy - not believing that I am the "right" mom for these precious special needs boys... very deep sigh...
Despite all of the dark secrets these walls could tell, there are far more beautiful memories to be told! The walls echo daily with the laughter and chatter of two bothers who love life! The wall vibrate with the sound of boys' feet running laps in our home. There are sounds of great cheer as the boys accomplish new tasks that have taken years to develop. There are hours upon hours of stories being read. There are dance moves that create family supper starts. There are songs sung a bit off key. There are creative modern art (now painted over) on the walls. There are car races, ball games, smiles, hugs, kisses, jokes, adventures, discoveries, performances, songs, family work-outs, laughter...These walls are flooded with LOVE!
Just because God has blessed us with two boys with Down syndrome DOES NOT mean we have a perfect, story book life! I would argue that quite the opposite is true; that through God's divine wisdom He gave a very broken Frank and Betsy two amazing (but far from perfect) boys to teach us how to become whole, forgiving, grateful and loving ... Thank you, Lord, for my family and this home!
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